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New member - Page 2 - Carers UK Forum

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Hi Annie,
Hope you are having a better day today. My mother also had a stroke ( brain haemorrhage) nearly two years ago and yes it is hard going. I however do not live with my mother so at least I can escape to my house ( although that has become a bit of a battlefield too between me and hubby - another story).
My mother was totally opposed to carers to the point she refused and said she would manage which she could not. I had to tell her without the carers I could not cope which was true. At first she hated them and moaned constantly. Now she is fine with them and some of them she positively looks forward to seeing. You have to have some kind of help whether it be by carers coming in or occasional respite. I too stopped working ( but was medically retired) just before the brain haemorrhage came along - I loved my job and miss it greatly. I sympathise with your situation completely and hope you get some help / respite and a much much needed break very soon xx
annie
my mum has the same dislike of strangers . they seem to want only us dont they? i think a day care centre sounds a good idea. i am in the process of trying to get that set up for my mum. surely they would make some friends despite themselves? having difficulty accessing a place at the moment so hope you have better luck. need some time off, both of us. let us know how it goes
diana, most definitely, the sooner the better. Lovely to meet you and thank you. I will certainly keep you updated. The very best wishes to your and mum also, hope you get the help you need soon. xx
worrywart, your situation sounds almost identical to mine. I'm glad your mother got used to the carers; unfortunately mine is too set in her ways and stubborn to give way in this matter. It may well come to that for me too regardless of how she feels, but for the time being, I think I'm going to have to rely on my brother to help out until we can arrange the daycare, thank goodness he's more than happy to help, he's a good man. I'm going to talk to him asap with regard to arranging for mum to stay with him again for a short while. Thank you so much and the very best wishes to you. xx
Hello there Annie, Welcome. Image Your situation is a mirror image of mine. My dad had a stroke 3 years ago, your mum and my dad seem to have developed the same personality!. He is just happy in his home, doesn't want to go out, refuses to go into respite. Although he went once and hated it!. He is going to go again, but doesn't know it yet! He has other issues as well, but my caring role started when he had his stroke, He is disabled, but gets about with his stick and frame. He can be a bit bonkers sometimes, irrational and is full of anxieties. Will say though 3 years down the line we are in a routine, We are set up as well as we can be with regards to having carers coming in twice a day, and someone comes and gives him a bath on a sat. His home is adapted as well as it can be and we have a helpline fob thing what he wears round his neck in case he takes poorly.
I work full time too, and my day is never done. There is always some appointment, some drama, everyday we don't know what is going to happen. I am lucky I have supportive employers and they are very good at letting me have time out when I need to. (I haven't put a full week in since going back in the New Year, with one thing and another). I have a Sister, but she lives 200 miles away. She comes up when she can but there is nothing set in stone on a regular basis, I just appreciate the times when she can come up and I disappear to my flat for the couple of days she comes up. ( I kept my flat on when it all went belly up) It is my little haven! I drink and smoke far too much too, And most of my friends have deserted me. It is very rare I get to go out socially. Although I do think of my job as my social life. So I am lucky in that sense.

Take care.

Regards. Busymiss. xx
Busymiss, hello and thank you for that warm welcome. Image First off, hats off to you on your strength in taking care of your dad and holding down a full time job! Although I do understand what you mean in that it's your own form of respite from your dad. I myself was working as a home carer for the elderly when I was forced to quit, so unfortunately my job didn't offer the same relief (although I don't have much now, and caring for a relative is far harder!) But I was constantly short-tempered and irritable and something had to give, so I had to put mum first. Thank heavens for our respective siblings. I'm luckier than you in that my brother lives in the same town and I can go to their house any time, even if it's to have a moan and a cup of coffee, lol (I can leave mum alone for a half-hour so I am able to do that, thank goodness). Mum has a lifeline too, although I don't believe she would remember to use it, should the need arise, which is another worry about leaving her alone, even for a short time. I'm so sorry to hear that your friends have abandoned you, unfortunately as we all know, unless they've been in our situation it's impossible for them to understand. This site has indeed turned out to be a lifesaver for many of us.

I heard from Adult Social Care this morning with a view to putting mum in daycare and also arranging for respite so I can take a holiday - such a relief! I'll have to wait 3 weeks for a visit but with the help of my GP (who I'm seeing again on Thursday) I'm hopeful I can hang in there until then. Mum's now agreed to go into respite, although I know she doesn't really want to have to - whenever the subject comes up, all of a sudden she needs to go "have a lie down" but like my brother said, God bless him, mum just has to suck it up and deal with it - I'm taking diazepam for anxiety, ramipril for high blood pressure, I'm so stressed I struggle to remember what people have said to me after 10 seconds, I feel like I'm single-handedly funding the entire tobacco and alcohol industries and most alarming of all, I've been having these weird involuntary visions of me committing seppuku with a bread knife. Something, finally, has to give. Regular breaks and time to myself will set me to rights, I'm sure of it.

I sympathise completely with regard your dad's stubborness in refusing to go into respite care. The hardest thing to get used to, apart from being a parent to our parent, is to have to endure the increasing self-centredness in them which comes with age. But we absolutely MUST take care of ourselves in order to function, and that's something I have, at last, got to grips with. Thankfully, now, mum has realised it too, whether she likes it or not. Image

Kindest regards and best wishes to you. xx
dear annie
how familiar it all sounds.you sound exhausted. great adult care is getting back to you relatively quickly(mine has quoted 10 weeks) still 3 weeks is long enough whenyou are worn out . i do hope they can find somewhere nice for him. im also lucky to have helpful brother but i dont think he quite "gets" dementia(mind you not sure i do either)i thought i was the only person left who smokes too much.
Hi, I'm reluctant to post as I usually draw criticism from what I say, but FWIW, and IMOO (in my opinion only) and whatever other caveats I have to place around what I say (including of course that I may well be totally wrong and extremely horrible!), but....(assuming your mother is not suffering from dementia, in which case, as ever, I will point out before it's pointed out to me, that nothing I say is relevant, because it applies only to those in a non-dementia situation)

... you are not responsibile for your mother's happines.

It's one thing to take care of her physical needs, but depressives cannot be 'cheered up'. She has a lot to be depressed about, yes - she is old, infirm, and facing her own mortality. You are doing what you can to give her physical support, but you can't 'cure' her illness, or her infirmity, or her mortality. You can't, no one can. It's something she has to face up to, just as we will all have to, one day. It's intensely sad, intensely frightening, intensely 'depressing' but there it is.

For that reason I would say (with all the caveats above), that you are 'pouring yourself out like water' in to a perpetual desert.

I understand the suicidal urges. In my own far, far lesser 'prison' than the one you are in, I've felt them too. If I truly believe my life as a carer isn't going to change, that I will spend the next ten years of my life as I have the last five months, I just don't want to live - I don't want to go on with a life that is a perpetual and daily torment to me. (I know I can't kill myself as I have a 20 year old son, who already lost his father to cancer, so I know there is no 'real' danger of me committing suicide, but I certainly have nothing to live for as a carer....which is why, like it or not, when it comes to a 'her or me' decision, it's going to be me, not her....harsh, but true.)

I hope you can manage to draw back from the 100% committment you are making to your mother, and to put your own happiness and well being as high, or at least partially so, as that of your mother. I urge you to read your posts as if someone else had written them, and to see what your first reaction would be. Would you, I wonder, think what I immediately thought, that whether or not your mother doesn't want anyone else to care for her, that's what needs to happen to give you some esential 'time off' from her. It doesn't mean abandoning her totally, it means giving her half your life, not all of it. And she has to make some sacrifice for you, just as you are sacrificing so much for her. (That's only my opinion of course, and many, many others may not think the same, and they may be right for all I know.)

I won't write more, as I always get into trouble here if I stand up too much for carers and not carees!

Kind regards, and hope things get easier for you 'somehow'. Jenny.
Hi diana,
My goodness, you're having to wait 10 weeks?? I'm so sorry to hear that. I thought 3 weeks was hard enough. Is your brother helping you out in the meantime?
My dear, you are certainly not alone with regard to the nicotine. One 50g pack of tobacco usually lasts me a week - just lately it's been 3/4 days. I have only to hope that my lungs are more resilient than my mental state and won't turn against me before things finally stabilise around here. Image
jenny, thank you for your message and I agree with you. If mum had steadfastly refused to meet me halfway, like some other carees are prone to do, I would have had no choice but to refuse to care for her any longer, as much as it would have distressed me to do so. There is simply only so much we can give. I too have dreaded the prospect of having to do this for another decade or so (mum is 73) and I don't mind telling you that the very thought of it fills me with horror. Life is hard enough without having to sacrifice it, even for those we love. I used to regret never having children; now, I am thankful I am childless as I would absolutely hate having to end up being a burden to them in any way. That also sounds harsh, but it's true. I'm so sorry for your situation. But when push comes to shove you have to put yourself first - you have no choice.

Along with the suicidal thoughts I have also indulged fantasies of just jumping in my car and driving away. In reality I could never do that, but there have times when I have come damn close. You are absolutely right in that 100% commitment is impossible. And I am determined to stick to my guns, whether mum is happy with the situation or not.

Take care of yourself as much as you have to. Kindest regards and best wishes to you. xx